Living With JHD

• They say Juvenile Huntington’s Disease, used to be called Parkinsonism, is extremely rare, than why are so many people showing up? You might think we found most of the kids with jhd, but the truth is this is only a small portion of them.

• Just because it say’s jhd and hd on it, doesn’t mean it helps the kids too. You have to be careful.

• Huntington’s Disease and Juvenile Huntington’s Disease behave differently.

• Tests like swallow studies, ekgs often, most the time, come back normal, even when it’s not normal, they just can’t catch it. They have to catch it during an event of it.

• Many people just call them spoiled or lazy or bad kids.

• Kids don’t want to go do things, they’re just making excuses, myth!! They know what their body can handle and can’t

• Their brains don’t lose neurons, they get damaged and scarred.

• The immune system is in overdrive. It never turns off.

• jhd causes your teeth to go bad even if you take care of them all the time, something the dentists don’t believe but it is true.

• This is a ridiculous fact but true, jhd causes earwax build up way more than normal.

• Your nails grow faster.

• jhd makes your hair fall out, you won’t lose all of your hair with it, but your hair will thin and you might even need to get hair extensions if you want to make it longer again.

• It may seem normal at times, but it can cause you to hop at random moments. Not even parents believe me there. I believe it though.

• The doctors scale will probably tell you that your weight is normal every time  even if it’s fluctuating all the time

• It can make your heart stop and you can fall and turn blue, and than get right back up, it makes your heart go fast, slow, anyway it wants it to really. It can become irregular.

• If it’s there, it exists, at one point you stop reasoning why and start saying it’s just there, your stomach hurts your throat feels funny, it’s just there.

  Being itchy is neurological pain just in the form of being itchy.

• Often run low grade fevers.

• Eye sight and depth perception affected gets worse.

• Symptoms can come and go.

• 

  They can get sicker than better than a lot sicker, etc.

• They get sleep disorders, they can stay up for days.

• They have it present stronger on one side of their body.

• The feeling/ textures of clothing, sheets, socks, jackets, everything could bother them, it’s easier to let them pick it out and feel it themselves.

• They say a small percentage gets seizures, but they’re finding it’s closer to half or more.

• They stay particular on one type of food, one type of flavor for a long time.

• Too much stimulation upsets them.

• Nothing is sudo. You can’t catch it by watching someone else have it.

• Each child’s different even in siblings.

• The kids don’t like change.

• They are not the disease, be mad at the disease not them.

• Extreme nervousness, that may often cause stomach aches even for simple things like doctors appointments.

• Random dystonia in any part of you, it can feel like severe cramps in your 

  

• legs or toes etc. It can attack your whole body. Even all at once.

• The scales for adult huntington’s disease stages don’t work for jhd kids 

• Chronic hemroids can be common in jhd.

• Menstrals can be a billion times worse in jhd because they develop cysts.

• Regular pain medications and sleep medications don’t work they often have the opposite effect and keep the child awake instead.

• You can feel like you have to go to the bathroom all the time even if you don’t have to.

• It can burn a lot of the time when they go to the bathroom even without a uti.

• Your ankles can turn in when you walk, your feet can turn out or sideways, or you can toe grab, it’s grabbing the floor with your toes when you’re walking.

• They can tell you that you don’t get side effects when coming off a medication, they’re way wrong, especially don’t remove it right off.

• Sicknesses are often piled on eachother, uti with flu, or cold and infection etc

• Dystonia can move parts of your body around.

• It can cause blood sugar issues where you all of a sudden get extremely shaky and need peanut butter chocolate and real food.

• Therapies can often do more harm then help, watch what they’re doing when they’re with them. Voice your opinion if you think something’s not right

Here’s a few things that have helped us with this disease:

Non choke food taster

Heating blankets Helps Their Aches And Helps Them Sleep
Air Conditioners
Sensory Items (Fidgets), They are often squishy balls that feel different helps with sensory and strengthens hands, rocks springy things noisy things soft things, anything they find and feel even as simple as a rock. In sensory needed though you need to have a big sensory ball, the fuzzy/stringy play balls.
Bed Surround So They Don’t Bang Against Bed Rails Or Fall Out Of Bed

http://www.geniecare.com/safesides/

Use those wraps that have the corn in them to heat up and keep for them, always always have them available.

Walker Sometimes Full Body Sometimes Smaller

Balls From Ball Pits Often Calm Them
Body Sox Calm Them and Help With Restless Leg Syndrome
Pressurized Vests Or Weighted Item Calm Them
Stroller/ Wheelchair
Bath Chair/ Potty Chair
Cups That Monitor The Amounts That Come Out Of It (Water Bottles work too and Toddler Cups)
Special Socks For When They Rub Against Things
DVD Players or Music Players for when they get upset or overwhelmed, they now have ‘kid tough’ dvd players, music players with big buttons and that don’t break easily
Televisions yup those help alot
There’s alot of games out there that help with speaking, memory, etc like guess who
Rocking Chair helps with the calming and movements
Straws very helpful when it comes to drinking but sometimes doesn’t work due to the work it takes to suck the liquid up the straws
Ispy books
Pads of all sorts for the falls, knee pads, elbow pads, pads for under tables, around beds, pretty much anywhere that you think should be padded
Balancing Boards
Wii Fit helps improve balance, movement, hand eye coordination, and it’s just plain out fun
Excersize Balls
If they can’t drive and want to get around try a scooter, go kart
Hand Braces
Foot Braces
Therapy Putty helps strengthen hands and counts as a fidget
Flat Shoes that supports whole foot and can even find some called high tops that support the ankle too, we use bendable for the toe slipper/shoes now called muk luks
There’s page turners where you press a button and they can turn the page that way
Dynavox/ speaking device

Ipad has speech apps and also great for playing games adapted etc
Noise Reduction Headphones for when they listen to music or watch dvd or anything to reduce stimulation and they don’t fall off as easy with movement disorder
Non- spill cups they don’t spill over when dropped
Diaper Genie keeps the house smelling good and holds messes easily
Milkshakes/ puddings/ jellos/ wafers help when they get low on calories and have a hard time with intake
Shower Head With Detachable Sprayer
Ceiling things like star shadow or anything to decorate the ceiling when they get advanced
Ice Pack Rolls/ Gel Ice Packs
Tag-less ,seamles clothing
incline board
carnation instant breakfast, or scandi shake suplement juice boxes/by boost,ensure,water bottle at school
padded seatting in school
spirometer
alternating preasure mattress
nuk/oral exercises
memory foam pads
5 point harness booster seat on chair
special needs carseat
versaform cushion
breastfeeding pillow for positioning,pillows of all sizes
cotton beeding,bathblankets
bandanas for clothing protection and bibs with the bottom catchers
sheepskin covers
pulse ox with ekg reading and recording ability and core oxegyn sensor
B.Preasure cup
stethascope
thermometer
baby moniotors
programmable large button phone NOT cordless BUT has a picture for each programmed number…had for karl and worked so well he used it until his last few months of life.. I did cover the 911 button because the only downfall was if he couldnt reach me or the others on phone didnt want him calling 911 .. 

wheelchair ramp
fingertip crayons and paintbrushes
sand tray
moonsand
magnetic games
puzzles
large button remote
daily medication organizers
heated mattress pad

heated blankets

picture words

memory games

I use a camcorder (flash) to document my symptoms and tape recorder to record memories or anything i want them to remember or things i want to remember. Karli used disposable cameras.
cooling mat they have large rolls that look like ice cubes probably in more of the sporting goods

punching bag,for aggression
balloons,balls of all sizes shapes textures

anything that their senses like a rock a pen and eraser

button and seashell collection
beadding sets
lots of HUMOR
hammock swing/ airwalk swing/ platform swing
Food Grinder

always bring your own stuff to the hospital too blanket pillow their meds you don’t know what meds they have in supply for them that they take, keep an emergency bag packed, and you can get a small pill carrier with the chopper to cut them in half inside a small carry in purse the size of your hand.

Magic Bullet to blend, milkshakes, food, anything really

http://www.buythebullet.com/

Use calenders to organize nurses, doctors, anything you need to remember it helps alot trust me, you can even use them to write down events that happened that day to help with memory
Make lists of things to remember for doctors or new symptoms, what date they happened, and things that helped them, or if they do chores keep a list of what chores
Post up little reminders when they need them about closing doors, how to wash dishes, how to shower, how to get dressed etc always get copies of medical tests and consults for helping to coordinate medical care

What i’ve found to help anxiety wise is progressive muscle relaxationhttp://www.anxietybc.com/resources/pdfs/MuscleRelaxation.pdf and calm breathinghttp://www.anxietybc.com/resources/pdfs/CalmBreathing.pdf if they get angry it usually helps to have them walk away and calm down

wreck this journal this is not a book  those kerri smith books help you can destroy them it tells you too and there’s the book of me a do it yourself memoir past present future you can fill out how you want your service the songs your life 

memory gets hard, photos maybe even write a memory by it videos stories scrapbook

recording what you were able to do once on camcorder etc

battery operated portable doorbell system you can add on buttons to it

behavioral modification therapy
art therapy
massage therapy
water therapy
music therapy
Tichi
Yoga is good for hd
Physical Therapy
Occupational Therapy
Speech Therapy
clapping therapy/pulminary therapy

keeping videos on hand with you of whats going on for the doctors and it seems they like to ask you questions over and over, meds, diagnosis, primary doctor, keep it written down with you so you don’t have to repeat it

Please email me so we can keep the list and information growing on here! jacecat_99@hotmail.com

wristbands also help her from banging her wrist into edges of tables or doorways, her wrist protrude a bit from the dystonia, and not much fatty tissue there to protect her wrist. In fact very thin.

And the dr. soles inserts helped in her foot pain

It looks like they put long socks on Sonia’s hands to help her

Thick it works really great for swallowing food and beverage!

A gallon sized zip lock bag. Hair gel. Then I bought little rubber toys like bugs, rubber band bracelets…. Also sparkly confetti. I even found confetti that say”Elijah”. You could put anything in it. Like marbles… Etc. Then I used duct tape to seal it. I went all around the edges with the duct tape.

-Daniella

To Strengthen Hands, Just put the play dough in and tie the balloons,